Lack of sleep: Lack of sleep! I am sure... - Restless Legs Syn...

Restless Legs Syndrome

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Lack of sleep

RestlessMe profile image
12 Replies

Lack of sleep! I am sure that you are understand how I feel. That in itself is quite refreshing

I took premipraxole at 8 and went to bed at 10. Legs were fine. By 10:30 pm on leg felt very heavy, Tonight is my left leg. Then the crawling sensation starts, time to get up again yawn.

Does anyone have any tips, fixes that help even temporarily or short term.

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RestlessMe profile image
RestlessMe
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12 Replies
Joolsg profile image
Joolsg

Can you tell us what dose of Pramipexole you're on and how long you've been taking it? Did it used to work?Have you had full panel bloods? Are you taking any other meds at all?

We can point you in the right direction but if you're on Pramipexole and you are suffering, chances are you have augmentation and will have to get off it.

RestlessMe profile image
RestlessMe in reply to Joolsg

Hi thanks for the quick reply. I’ve been on Pramipexole 88microgram tablets for about 6 months. I can take two a day if I want, but I rarely do that.

RestlessMe profile image
RestlessMe in reply to RestlessMe

I have not had full panel bloods. I have an appointment (phone) with the doctor in two weeks when I will ask for this to be done.

I take 100 g of Sertraline but I have currently cut that down to alternate days.

Pramipexole worked really well the first three months or so. It was life changing but over the last 6 to 8 weeks RLS worse. Jerky legs added into the equation. RLS happening if I rest during the day, which is really unusual

Joolsg profile image
Joolsg in reply to RestlessMe

Ok just saw this reply. As Pramipexole has stopped working after initially being successful, it looks like you already suffering augmentation ( increase in severity) of RLS.Do NOT increase the dose.

Take the opportunity to get off it now.

Augmentation just gets worse and the longer you've been on Pramipexole the harder it is to get off.

Show your GP the pinned post on this site which explains Augmentation.

The fact he didn't take bloods, didn't tell you sertraline triggers RLS and didn't warn you about the dangers of Impulse Control Disorder ( gambling, shopping addiction, hypersexuality) or Augmentation shows he knows nothing about RLS.

That's why we have to research. RLS is not taught at medical schools in the UK.

First reduce or swap sertraline.

Second, get bloods and raise serum ferritin. GP will tell you bloods are normal but insist on numbers. We need ferritin above 100, often above 300.

Then,slowly reduce Pramipexole by cutting the pill and reduce by half a 0.088 pill every 3 weeks. If withdrawal is tough, ask for a low dose opioid like tramadol or oxycodone to deal with the increased severity or try cannabis. It's legal in the UK now and a few people have it for RLS but it takes a few weeks to go through the process and it's only available privately.

It was the only thing that helped my withdrawal symptoms.

I suspect you may be someone who can be med free once off sertraline, Pramipexole.

Over 60% of RLS patients see dramatic improvements with IV iron infusions.

Just print off Mayo guidelines, read all about augmentation and Impulse Control Disorder and discuss with GP.

Let us know how it goes.

RestlessMe profile image
RestlessMe in reply to Joolsg

Thanks again! I have managed to get a phone spot for next Friday now- so 5 days earlier! I can then ask for bloods. I have copies of the most recent bloods but no full iron checks . I will definitely print and read the notes and take the guidance to surgery as I can see clearly that education of GPS is key.

I have started reducing the Sertraline

I will take your advice on reducing the premipraxole- thank you. I had no idea it would take so long to find off of the side effects

This forum is fab! I only found it as I put a shout on Twitter when not sleeping .

Joolsg profile image
Joolsg in reply to RestlessMe

That's actually encouraging as you've only been on it a short time so getting off it may not be as hellish.Did your doctor take full panel bloods and ensure your serum ferritin was above 100 before prescribing Pramipexole? Are you taking anti histamines, anti depressants, statins, beta blockers or PPI meds?

The majority of RLS cases can be resolved by raising serum ferritin so that should be done first.

Pramipexole is no longer first line medication for RLS. Pregabalin or gabapentin are now first line treatment.

Were you on any meds for RLS beforehand?

RestlessMe profile image
RestlessMe in reply to Joolsg

No full bloods by the doctor before prescribing pramipexole. Other than sertraline I don’t take any other medications. I do take vitamin D and, a mineral and vitamin supplement

Do you have any recommendations on how I raise my serum ferritin levels? Sorry if I sound a bit daft as I’ve never even heard of them until yesterday.

RestlessMe profile image
RestlessMe in reply to RestlessMe

And I have never taken any other meds for restless legs. I’ve put up with it for years, and I only spoke to the doctor when it was affecting my sleep and quality of life

Joolsg profile image
Joolsg in reply to RestlessMe

Sertraline triggers RLS. All SSRI & SNRI anti depressants trigger and worsen RLS so have a chat with the GP. Safe anti depressants are wellbutrin ( used in UK to get people off cigarettes) and trazodone. If you can switch, then do so. RLS is mainly caused by low brain iron and even if blood iron is fine, we don't get sufficient iron into the brain.

Oral supplements can take ages to raise levels so iv infusions of Injectafer are given, particularly in the USA.

In the meantime I suggest you buy ferrous bisglycinate (gentle iron) and take it last thing at night every other night as this fools hepcedin, a chemical which blocks absorption into the brain.

Read all you can as RLS isn't taught to doctors in the UK so they're unaware of the link with low brain iron or that many meds trigger and worsen RLS.

Spend a few hours reading latest posts and replies and you'll see that Pramipexole is a problem drug and low iron is overlooked by most doctors.

RestlessMe profile image
RestlessMe in reply to Joolsg

Thank you, really big thank you. I have no idea how much it’s out talking about it, and your advice is so welcome.

SueJohnson profile image
SueJohnson

A full iron panel is what you want to ask for. The link for the Mayo Clinic Updated Algorithm is Https://mayoclinicproceedings.org/a... Joolsg has given you some excellent advice.

SueJohnson profile image
SueJohnson

When you get your test for ferritin, stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest.

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